The Story Shop – Bringing Mental Health Stories to Life

Nottinghamshire Healthcare NHS Foundation Trust

The Story Shop is special to all who come into contact with it – the ‘Stories’ benefit with their own personal recovery, wellbeing, they feel valued and respected, the importance of their lived experiences are making a difference and they know it. They are incredibly honest and open about their lived experience, some stories are intimate. Those who listen whether it be medical students, members of the public or young people all take away a lived experience, a new understanding of mental health and an understanding of our continual fight against stigma (we have qualitative evidence).

The difference from other projects is that it is a win-win for all concerned everyone involved gets something out of a Story Shop Session. Our ‘Stories’ have spoken to over 4,500 people. The key elements contributing to our success are the power of the spoken word and lived experiences from the people who have mental health / carers of people with mental health. Their commitment to undertake ongoing training, advice and support to enable them to deliver in a professional competent way. Working in total partnership with respect and understanding of each individuals recovery journey and the effect mental health has had on their lives and their continual battle with everyday living.

Organisation

Nottinghamshire Healthcare is a major provider of mental health, intellectual disability and community healthcare services for the people of Nottinghamshire. We provide services across the county for people with mental health needs, with needs relating to drug or alcohol dependency, mental and physical health services for people with intellectual disabilities and community physical healthcare. We also provide secure mental health services. We see about 190,000 people every year. Our 8,800 staff carry out a wide range of roles, working together to provide integrated and coordinated care and support to those using our services.

Summary

Nottinghamshire Healthcare’s Story Shop programme brings the stories of people suffering with mental ill health, and their carers, to life in a way that challenges stigma and promotes understanding and acceptance. Our service user volunteers generously commit both their time and their personal stories, our staff dedicate real skill and sensitivity to facilitate the conversations and our Board and Executive Leadership Team back the programme, all recognising it’s power and importance. It innovates in the way that it enables safe, honest and intimate conversations that encourage inquisition. Evaluation has shown overwhelming praise for the initiative, and we believe that it serves as a model which could be used to challenge a wide range of prejudice and stigma and to invite professionals into the field of mental health.

Background

As the major provider of mental health services in our region, it’s important that we help to tackle the stigma that surrounds mental ill-health. We believe that by challenging stigma, we can encourage the people to talk about mental health as they would any other health concern, and that this will result in earlier treatment, less isolation, better understanding and more focus on recovery. We were aware of the ‘Human Library’, which aims to challenge prejudice through social contact by positioning people as ‘books’ and allowing others to speak with them and ask questions. Social contact is known to be one of the most powerful means through which stigma can be tackled (http://bit.ly/1TgsdwV). We translated this idea to nurture conversations between our service users and young professionals, staff and the public. Our intention was to sensitively facilitate the kind of contact that would encourage people’s inquisition and support our service users to share their stories safely. From this ‘The Story Shop’ was developed and created. All of the terminology and protocols that we use were developed in partnership with service users and carers and have contributed to its success, but also the sense of ownership that those taking part feel.

We began with medical students. They are an important audience because they are the primary contact for someone struggling with mental health issues and we are aware that there is only a very small proportion of medical training that covers mental health. We wanted to ensure they had a good rounded understanding of mental health and the many issues that come with it. Our ‘Stories’ talk with students prior to them choosing their career pathway i.e. GP, with the hope that the students will then look at mental health in a totally different way and begin to understand the wide range of complications they cause in everyday life, and will appreciate the recovery journey taken.

We incorporate the carer perspective to ensure that students understand and consider the whole picture. We know that nationally there is a shortage of psychiatrists and the Migration Advisory Committee (MAC) added Core Psychiatry Training to the shortage occupation list in 6 April 2015 and we aim to show that treating, supporting and helping people with mental health issues is interesting, rewarding and hugely worthwhile.

Planning & Delivery

Daniel Tsoi Consultant Psychiatrist and Clinical Teaching Fellow & Associate Clinical Subdean at University of Nottingham approached The Story Shop Team in 2013 with a view to working together. We now deliver one Story Shop session to each cohort of 4th year medical student during their mental health training (four a year). This work continues and a request from the Medical School to double the number of sessions that we run is currently being discussed.

Daniel Tsoi said “The Story Shop is very useful and it really helps students to see the other side of mental health. Students can often become focussed on the pathology and the Story Shop gives them a totally different perspective and see the recovery that is possible. It is important that that they also get chance to speak to carers and their role in mental health, and how this isn’t just about the medical but how vital the social aspect is to people’s recovery.”

The Trust Board has always supported The Story Shop, from the very beginning it was signature strength of the Trust’s anti-stigma campaign and since then has been more widely embedded as part of the Trust-wide Involvement & Experience Strategy. In partnership, we decided right at the start that we were a team working together service users / carers and staff.

A Story Shop Steering Group was formed and decisions made on how we:

Engage with a ‘Story’ – we have regular talks with our volunteers about the Story Shop – explaining the process, from this we identify a possible story teller.

Write a ‘Story’ – we ask the volunteer to write their story in their own words, with a start, a middle and an end. We meet with this person several times talking through what they have written (and usually what they haven’t) and between us we develop a story starting from the beginning of their mental health journey to where they are at present. We usually have the very long story, we condense this into bullet points to help volunteers when telling their story.

Train a ‘Story’ – we spend time talking through the expectations of being a story explaining that the experience is interactive and you are not only telling your story but that you must listen to questions asked and feel confident to answer honestly. We ensure you ready to tell your story, talk through what to expect and how you may feel and what to look out for. Ultimately our Stories are in charge and at any time they can stop a session should they wish to. We ask all our Stories to read and sign a Story Shop Contract this is an agreement explaining how we will keep them safe and what is expected, also contact details for an emergency.

Support a ‘Story’ – before a session all the stories and the member of staff meet up and talk for half an hour about how we are all feeling – this is where the staff member will recognise if a story is feeling vulnerable/emotional. Time will be spent with this individual ensuring that they are happy to go ahead with their story, we go through the signals we use when in a session so that the story is relaxed and emotionally prepared. During the session the staff member makes sure all Stories are facing them so that at all times the stories face and body language is visible, the staff member continually walks around listening and watching ensuring that all the stories are coping and feel comfortable and aren’t struggling in any way.

Keep safe signals whilst Story Shop in session – all Stories have bottled water and a pen on their individual table. During training we explain that at any time should they feel uncomfortable/under strain that they lift their pen and wiggle with it, the listeners are not aware that this is a signal but the member of staff is and will immediately go to the stories assistance. The staff member is extremely vigilant during each session and will notice any small change in a stories body language (this is extremely draining experience). A decision is then made if the Story wishes to carry on or take time out in another room where they can talk through how they are feeling.

Follow up aftercare of all Stories – At the end of day we all meet up again for a cuppa and talk through how we all felt the session went, how interactive were the young medical students, what did we all get out of it. It is at this point the member of staff will identify if anyone needs TLC. We will then talk with this person and ensure that they have someone they can talk to through the night should they need just to talk. The staff member will contact the Story over the next few days ensuring that they are emotionally feeling ok and will continue until they are happy that our Story is back on form.

Staff visit the venue before a session – liaise with partnership staff ensuring they have an understanding of our values/rules and expectations. We always ensure the room is large enough for all our Stories to sit at a desk facing the organiser of the session. We expect a separate room for our stories to go if they become upset or unwell. We have access to toilets and kitchen facilities for refreshments.

All through the planning and delivering of the Story Shop, Service Uses / Carers and Staff work together!!!! At any time the staff member running the Story Shop or Story Shop Meetings has concerns about a Stories mental health it will be for them to decide if the Story should be used or be encouraged to take a break. As part of the training to be a ‘Story’ we discuss that both the ‘Stories’ themselves have permission to stop at any time and we also give permission to those staff running the event that they can ask a ‘Story’ to stop at any time; this is in the context of looking after an individual’s wellbeing . The ‘Stories’ are the most important part of the whole process and without them we would just have an empty shop! De-briefing is always offered after an event, and because of the way that volunteers develop through the Involvement Centre, staff see volunteers that have taken part in a Story Shop regularly afterwards.

Impact & Results

We measure the impact of Story Shop on our Stories by talking with them during an event and when we get together with new volunteers to inspire them to become Stories. We recognise it is a very powerful tool and that although sometimes our Stories are exhausted from this experience they are also exhilarated and get an enormous sense of wellbeing and pride.

The Story Shop works two fold, it educates and reduces stigma for those listening to the ‘Stories’ but also for those Storytellers taking part it supports their own personal Recovery.

“When I am talking about my story I can see how far I have come – what I have achieved in my recovery and how proud I should feel”

“As a carer – I feel it reduces stigma, opens up opportunities for carers to put their point over to the students who are our future medical professionals. It makes them think about the role of the carer and the importance of listening and understanding their needs. It educates – one comment from a student was ‘I never really thought about talking to carer’ which says an awful lot.”

To measure impact on the students The Story Shop Steering Group developed a questionnaire for each student to fill in on completion of each session. A set of questions with answers 1 to 5 are asked – students circling their answer, we then put this information on to a spreadsheet which results in simple pie charts showing by percentage how the Story Shop has impacted on them. In 2015 86% of medical students agreed or strongly agreed that it helped them appreciate the concept of recovery in mental health. 96% agreed or strongly agreed it helped them to understand different dimensions of mental health and 91% agreed or strongly agreed that it helped them recognise how stigma impacts on mental health. We also ask for comments which continually evidence the power of the spoken word and the effect of students listening/talking to ‘Stories’.

“It’s the clearest and widest picture of mental health I’ve experience so far. Hearing from patients and carers who have extensive life experience of mental health gives more information and perspective than any other teaching method I’ve had so far.”

4th year medical student – “Honestly, I am truly inspired by the people I have met. What they have all been through and where they are now – words cannot describe how touched I am. These people inspire me to be a better person – brought tears to my eyes. I thank-you all”

In August 2013 Stephen Kendall, DMS, MBA did a study on The Story Shop with a focus on the work being done with medical students titled; ‘Can mental health stigma be reduced by interactions with the targets of the stigma?’ in this paper he concluded that although these students started off with a lower threshold of stigma compared to the general population their prejudices and stigmatising thoughts did reduce further after their interaction with ‘Stories’ in The Story Shop. As far as we are aware we are the NHS Trust that run a long term project like this. Many organisations have picked up on the work of the Human Library, but we specialise in mental health in a way that the broader human Library cannot. Other Trusts do run one off events of a similar nature, but we have developed this and now maintain the project. We had strong links with the Human Library from 2009 to 2012 and we were responsibly for over a quarter of their loans nationally. Since we have developed The Story Shop it is unlikely that any other organisation can claim to have had face to face interaction with over 4500 people in any similar scheme.

Key Learning Points

All ‘Stories’ have read and understand their Contract/Agreement which they have signed to enable them to partake in a Story Shop.

Ensure all staff have an understanding of their role and what is expected of them on the day that they know and understand each individuals story and the person telling it.

Monitor and watch carefully throughout each session, how each ‘Story’ is and be able to stop any conversation should the ‘Story’ become distressed, the welfare of the ‘Story’ is paramount.

Stories are regularly updated, life goes on and stories are ever changing. Try and have a start – middle and end to each story.

Evidence available on request – including blogs from our volunteer ‘books’, multiple documents and guidance for our volunteers, students and staff and a video featuring both the volunteers and the students who have been part of the events (Apologies -document type ‘not valid’ on entry form).